Commentary by Dan Shapiro, Ph.D., Director, Medical Humanities Program, University of Arizona College of Medicine

Last year I asked 8 medical students to make films about patients. In pairs, they spent 8 months visiting and filming a patient and filming their real lives. They had to make at least three visits (most made 5-6), interview someone else in the patient’s life, go to a medical visit, and capture how the patient adhered, or failed to adhere, to the medical regimen. In fact, they went to home visits, birthday parties, festivals, sat in waiting rooms and met with a variety of health professionals. Then we edited their videos down to 7 minutes and showed them publicly and then in the curriculum.

Here’s the idea behind the project. Our medical school curricula have evolved, but were largely constructed between 1910 and 1950 when most patients presented with acute illnesses. Lengths of stay averaged more than three weeks in some hospitals and the medical trainee could watch, first hand, the entire illness experience from start to finish. Now, we spend 75% of our health care dollars on chronic illnesses and yet our trainees only see a smidgeon of the patient’s life.

In 1987 I was diagnosed with Hodgkin’s Disease and spent the next five years in and out of treatment. I had a few relapses, a bone marrow transplant, and more chemotherapy and radiation than one person should be allowed to enjoy. Along the way, I met a lot of physicians. While they were pleasant and competent, few had any idea of what it was like to live with the disease and its harsh treatments. And if they’d had a better idea of what it was really like to live with illness — they could have done a better job of preparing me for the predictable psychological and physical challenges I endured.

So, a few years ago I was editing a home vacation movie (new macintosh software gave all of us access to great editing software) when I noticed that there were things on the tape I hadn’t seen when I’d been taping the experience. I also observed that the act of editing is time consuming and requires careful thought — creating an organized narrative means understanding the important and less important parts of a person’s story. That’s where the idea came from.

We made four brief films including a woman with metastatic breast cancer, a young man with AIDS, a family coping with juvenile onset diabetes, and a woman living with a head injury, status post motor vehicle accident 25 years ago (in which her daughter was killed). While 8 data points are hardly convincing, to a person the medical students described this is as highly impacting experience and as of this writing I have 19 students signed up for this year’s project. They’ll likely work in groups of two or three.

Consider some of the issues portrayed on the films: Some are practical, such as, How do you get a six year old child to take a needle regularly? Which approaches to adhering to complex mediclal regimen work the best? And some are psychological, such as, How do you cope with the question of why me? How do you keep going when you’re convinced you’re about to die?

Here’s the bottom line:
Until our medical training systems realign to focus more energy on prevention and care of the patient with chronic illness, it behooves us to invite articulate patients to teach our students — our physician teachers have part of the story AND our patient experts have part of the story.

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5 Comments

This is terrific, and highlights, IMO, a central theme in medical humanities discourse: the difference between disease and illness. The former, of course, refers to the specific disease entity itself (though some, like Jacalyn Duffin, argue quite persuasively that disease is fundamentally a concept as opposed to a biological entity), while the latter includes the subject’s sensations, impressions, and experiences.

IMO, a point of departure for most medical humanities analysis is that the culture of biomedicine often encourages focus on the former at the expense of the latter. This point is nicely captured by many of the narrative theorists in particular, and is at the core of Robert Coles’s admonition in 1979 that reading great works of literature can situate the illness sufferer in context.

The idea is to facilitate healing of the patient rather than merely treating of the disease, because the difference is one that separates a healer from a technician. With that said, I too will step off my soap box.

Thank you for your thoughtful comment. I have data to suggest that this is exactly what’s happening — the students are seeing the patients more fully. Anyway, I hope that’s what happening! There is always the risk that I haven’t actually trained the medical students, I’ve just taught them what to say to me on feedback forms 🙂 !

Hello Felice,

If you tell me which ingredients to use and I put them together in whatever way I want, who’s recipe is it? I’d guess argue that it’s a shared narrative — but since the medical students get final cut, it may be more theirs. Given the sheer number of decisions to make while editing, I’d be surprised if any two people (or even one person twice) working with four or five hours of video would produce the same short (7 minute) film twice! I’m certain the narratives would be very different.

Regarding how the films are used, we’ve only had our films since May. In November they will be aired to the entire second year class as part of a 2 hour interactive lecture on living with chronic illness. The students will be asked first to work in groups to generate their own responses to the films and then to evaluate the impediments to optimal functioning facing these patients, the resources they brought to bear, clinical interactions they liked and didn’t like and maybe some other questions I haven’t thought of yet. These films may also appear in individual blocks (the woman with metastic cancer in the cancer block etc).

For Dan Shapiro–thanks for sharing this interesting project.
Question: Can you tell us more about how the videos are used in the curriculum?
Comment: I was interested in reading your comments about the editing process and the construction of a video narrative. Which raises the question, “whose narrative is it anyway?” In other words, it appears that it is the medical profession (medical students and their mentors) that is constructing a narrative for their own (teaching) purposes. Would the family members have edited the video differently (and what would they have filmed?)?

The Videos are shown in the second year of the curriculum to all of our students. Regarding your thoughtful question about who’s narrative — the building blocks are constructed by the patients, their families and the medical professionals who work with them, but the students put them together — so I guess it’s a combination.

For what it’s worth, a number of the families have asked for extra copies to send to friends. I suspect (and hope) that won’t always happen — I don’t want these to be celebrations bur rather an honest look at the challenges and triumphs of real illness.

Dan, it was interesting to read this post. From the perspective of someone whose relative recently passed away from a terminal illness, I feel that the families would treasure the videos. Although it’s not a celebration, any kind of documentation kind of is, if that makes sense. I think it’s a very thoughtful thing to introduce it into your classes, it’s important for students to be aware of the bigger picture. That perspective is often lost when studying the details of the illness.